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Down Syndrome and Aging

As the French film “Amour” has beautifully explored, becoming ill with cognitive impairment is difficult enough for white upper middle class. It is that much harder for people who have less support, resources, or are physical or intellectual challenged already.

One such group that rarely receives attention in gerontology is the group with Intellectual and Developmental Disabilities (I/DD). A new phenomenon has developed. Because I/DDs are surviving childhood in greater numbers, estimates suggest that their life expectancy has increased from 18 years in 1930 to 59 years in 1970 to 66 years in 1993. Nowadays, life expectancy for those with mild I/DD is fast matching that for the general population. Although men are still lagging behind women in terms of life expectancy gains, the gains are positive across the spectrum.

Even those with severe I/DD are living longer—some living up to 80 years of age—doubling the number of older adults with I/DD in the United States from 641,860 in 2000 to 1.2 million by 2030. In a commentary in 2010 Elizabeth Perkins and Julie Moran, report that within the aging baby boomers, those with I/DD are however further disadvantaged. For various reasons, adults with I/DD are more likely to develop chronic health conditions and they are more likely to develop them at younger ages. Some disabilities exacerbate specific diseases in older age. For example older adults with Down syndrome experience higher rates of cataracts, hearing loss, hypothyroidism, osteoporosis, epilepsy, sleep apnea and an elevated risk for Alzheimer’s disease. For more than twenty years, Vee Prasher has been reporting that those with Down syndrome are not only more likely to get dementia (15-40%) but they get it earlier (estimated at 51.3 years of age) and the disease affects their mental capacities faster. The cause is still not completely clear although there are both external factors—diet, exercise, mental stimulation, ecological/environmental—and internal factors—genetics and neural capacity, among other causes.

In a research study looking at I/DD’s health in fourteen European countries—Meindert Haveman from University of Dortmund, Germany and his colleagues reported that low levels of physical activity and high caloric and fatty diets are probably to blame for the development of obesity. Obesity then promotes ensuing problems with cardiovascular disease, diabetes, constipation, osteoporosis, incontinence, and arthritis.

The brunt of caregiving seems to remain with the family. Over 75% of people with I/DD live with families, and more than 25% of family care providers are over the age of 60 years and another 38% are between 41-59 years. Aging parents lovingly looking after their children. Most studies address the incredible disconnect between available and appropriate services and needs of this aging cohort. And rightly so.

But the disconnect is not that this group is unique. The disconnect is that it exposes—because this population has such intense needs—the severe lack of policy for end-of-life and for aging in general. Policy seems baffled by the process of aging and the inevitability of death, which is most often preceded by ill-health. People with intellectual and developmental disabilities expose this disconnect because we did not expect them to age. The sad corollary of this is that we all do not expect to age, get ill and die ourselves.